Kornimate/medical-research-clean huggingface dataset:
integrating palliative care into self-management of breast cancer

Conditions: Breast Cancer

Summary: the purpose of this study is to test a psycho-educational intervention, managing cancer care: a personal guide (mcc), that is intended to improve patients' knowledge of palliative care and to facilitate its timely integration into self-management of their breast cancer. the mcc will be tested with patients with stage i-iv breast cancer at baseline, one, and three months following enrollment. the intervention group will receive the mcc, and the attention-control group will receive a symptom management toolkit. participants' family caregivers will also be enrolled to provide information on patients' self-management. investigators hypothesize that users of mcc, as compared to attention-control participants, will demonstrate improved knowledge, feelings, and behaviors related to self-management of their cancer care. this innovative research can help to establish palliative care as a mainstay of self-management interventions that target serious illnesses.


Eligibility criteria:
inclusion criteria: * over the age of 21 * stage i-iv breast cancer * live in the state of connecticut * speak english * receiving any kind of treatment for breast cancer * prognosis of at least 6 months

Keywords: palliative care self-management breast cancer
self-management training with online intervention process for young adults with chronic conditions

Conditions: Chronic Disease

Summary: the study was conducted from 15th april 2021 to 15th august 2021. it employed a pretest-posttest design with control and training groups. in this study, a pretest-posttest design including control and training groups was used. pre-assessments were taken from young adults who reported that they wanted to participate in the study via social media accounts and e-mail and who met the study criteria, and two groups were formed by the simple randomization method. the study group received 8 weeks of self-management training. the control group was informed about self-management for 1 week. final evaluations were conducted for both groups after eight weeks.

pre-assessments were taken from young adults who reported that they wanted to participate in the study via social media accounts and e-mail and who met the study criteria, and two groups were formed by simple randomization method. the study group received 8 weeks of self-management training. the control group was informed about self-management for 1 week. final evaluations were conducted for both groups after eight weeks.

Eligibility criteria:
inclusion criteria: * having no communication barriers * having a chronic disease such as asthma, diabetes, heart disease, or hypertension exclusion criteria: * being under 35 years old * undergoing concurrent psychological treatment/therapy * having covid-19 * requiring treatment for other diseases during the training process

Keywords: self-management chronic conditions young adults
pupillometric evaluation in patients declared brain dead - a prospective quality control study

Conditions: Brain Death; Adults

Summary: the aim of the study is to verify the reliability of the current purely clinical examination of the pupils (without the support of a pupillometer) in the context of clinically suspected brain death, compared to the results of a non-invasive, automated, and highly precise monocular pupillometric examination.

this prospective quality control study will evaluate the reliability of the clinical exam regarding pupils' reaction to light (as performed by two board certified physicians in neurology and/or intensive care medicine) as recommended by the samw guidelines for brain death diagnosis (samw-guidelines) when compared to the results of a noninvasive automated and highly-precise pupillometry in adult patients with clinically suspected brain death. automated pupillometric measurements will be performed by the pi (rs), or the co-investigator (dr. pascale grzonka) using the neuroptics® npi®-200 pupillometer system immediately before and after the standardized diagnostic workup for suspected brain death. in addition, demographics, clinical characteristics , treatment and laboratory data from the patients examined will be anonymously collected.

Eligibility criteria:
inclusion criteria: * suspected diagnosis of brain death * brain death diagnostic procedures planned * treated at the intensive care unit at the university hospital basel (usb)

Keywords: pupillometry brain death diagnosis
nuclear magnetic spectroscopy imaging to evaluate primary lateral sclerosis, hereditary spastic paraplegia and amyotrophic lateral sclerosis

Conditions: Primary Lateral Sclerosis; Hereditary Spastic Paraplegia; Amyotrophic Lateral Sclerosis

Summary: this study will use a magnetic resonance imaging technique called nuclear magnetic spectroscopy (h-mrs) to define the pathology and progression of primary lateral sclerosis, hereditary spastic paraplegia and amyotrophic lateral sclerosis and assess the usefulness of this technique in evaluating patients' response to therapy. h-mrs will be used to examine metabolic changes in the parts of the brain and spinal cord (motor cortex and corticospinal tract) involved in movement. normal volunteers and patients with primary lateral sclerosis, hereditary spastic paraplegia or amyotrophic lateral sclerosis between 21 and 65 years of age may be eligible for this study. participants will have up to five h-mrs studies, including baseline and follow-up tests. for this procedure, the subject lies on a stretcher that is moved into a strong magnetic field. earplugs are worn to muffle the loud knocking noise that occurs during switching of radio frequencies. the subject will be asked to lie still during each scan, for 1 to 8 minutes at a time. total scanning time varies from 20 minutes to 2 hours, with most examinations lasting between 45 and 90 minutes. communication with the medical staff is possible at all times during the scan.

standard mri imaging of the brain shows no consistent abnormalities in many degenerative disorders with progressive upper motor neuron symptoms, including primary lateral sclerosis, hereditary spastic paraparesis, and amyotrophic lateral sclerosis. nuclear magnetic resonance spectroscopy (h-mrs) is able to evaluate certain cerebral metabolites that reflect the functioning and integrity of neurons. the objective of this protocol is to study metabolic changes in the motor cortex and corticospinal tract using mrs in these disorders to characterize the pathology, the progression of the diseases, and assess the utility of mrs to follow the response to therapies.

Eligibility criteria:
inclusion criteria: adult patients with pls, hsp, and als already evaluated by protocol #01-n-0148. adult normal volunteers exclusion criteria: pregnancy, implanted devices such as pacemakers, medication pumps or defibrillators, metal in the cranium except the mouth, intracardiac lines, history of eye shrapnel injury or any other condition/device that may contraindicate or prevent the acquisition of an mri.

Keywords: mri neuromuscular disease n-acetyl aspartate choline creatine spasms spasticity primary lateral sclerosis hereditary spastic paraplegia spastic paraparesis healthy volunteer hv normal control
use of alternative medicine in patients with dementia and mild cognitive dysfunction

Conditions: Dementia; Cognitive Impairment

Summary: so far, no drugs have shown to stop or delay the pathological processes of dementia. available pharmacological treatment includes a small number of drugs; cholinesterase inhibitors like donepezil, galantamine and rivastigmine, and the nmda receptor antagonist memantine, all of which only affect the symptoms of the disease. at the same time, alternative medicines like herbal products and dietary supplements are often intensively marketed with the assertion of curative or alleviating effects on dementia. the documentation of clinical effects, side effects and the potential for interaction with prescribed drugs are, however, generally scarce. the aims of this study are to make a survey of the use of alternative medicine in patients with dementia and mild cognitive dysfunction attending the investigators out-patient dementia clinic, and to assess the interaction potential with the patient's other medications.

patients: all patients with a diagnosis of dementia under follow-up at the out-patient clinic are invited to participate, if giving a written consent. method: a semi-structured interview is undertaken by the doctor at the end of the consultation. patients and their company are asked to name their alternative medicines (if any), for how long the products have been used, where and how they learned about the products, ant to tell about their experiences with the products (i.e if they have noticed effects or side-effects). after the consultation information of the the actual product's contents and properties are obtained and an assessment of possible interactions with the patient's other drugs (prescriptions and self-reported use of over-the-counter drugs) is made. reported effects or side-effects are registered.

Eligibility criteria:
inclusion criteria: * diagnosed with dementia

Keywords: herbal drugs dietary supplements drug interactions
sirolimus for cowden syndrome with colon polyposis

Conditions: PTEN Gene Mutation; PTEN Hamartoma Tumor Syndrome; PTEN Hamartoma Syndrome; Cowden Syndrome; Bannayan Syndrome; Bannayan Zonana Syndrome; Polyposis

Summary: colon polyposis (the presence of multiple colon polyps) is very common with cowden syndrome, as over 60% of patients have 50 or more polyps. in a previous clinical trial, some participants had reduction in the number of colon polyps with the use of the medication sirolimus for a very short time period. this study is investigating sirolimus and its effect on the number of colon polyps in patients with cowden syndrome and polyposis over a 1 year period.

pten is a tumor suppressor gene that regulates the cell cycle through the phosphoinositide 3-kinase (pi3k)/akt/mtor pathway. when germline mutations in pten occur, the result is cowden syndrome (or less commonly one of several related disorders collectively called the pten hamartoma tumor syndrome). this is characterized by the growth of hamartomas and a high risk of cancer in multiple organ systems. this includes colon polyps in 92.5% of cowden syndrome patients and 64% with an estimated 50 or more polyps. although outcomes of this are under reported, series suggest 20-38% of patients will receive colectomy. current clinical practice for cowden syndrome is based on close surveillance for the development of cancers. sirolimus (also known as rapamycin) is a specific inhibitor of mtor that is fda-approved for immunosuppression and use in several types of cancers as chemotherapy. it has also been used successfully in other hamartomatous syndromes including lymphangioleiomyomatosis. there is also a completed pilot clinical trial for adults with cowden syndrome in which some had reduction in the number of colon polyps with the use of the medication sirolimus for a very short time period. this will be an open-label pilot trial to determine whether sirolimus reduces colon polyp burden in cowden syndrome. sirolimus will be administered for one year. colonoscopy with polyp estimation will be performed at trial entrance and at study completion.

Eligibility criteria:
inclusion criteria: * cowden syndrome or other pten hamartoma tumor syndrome spectrum disorder * confirmed pathogenic or likely pathogenic pten germline mutation on genetic testing * previous colonoscopy with colon polyposis. this is defined for the study as either too many polyps to remove endoscopically as judged by the performing physician at the last colonoscopy or findings indicating at least an insight stage 1 score (over 20 polyps). * age 18 or greater * capacity to consent to study exclusion criteria: * pregnancy or plans for pregnancy while on treatment or within 3 months of stopping treatment (for both women and men) * chronic kidney disease * chronic renal disease * history of colon cancer or colon adenoma with high grade dysplasia * history of colectomy

Keywords: pten cowden syndrome phts colon polyposis sirolimus rapamycin mtor inhibitor
internet-delivered cbt vs internet-delivered support and counseling for youth with social anxiety disorder - an rct

Conditions: Social Anxiety Disorder

Summary: social anxiety disorder among youth is highly prevalent and causes significant impairment in the lives of the affected. in spite of cognitive behavior therapy (cbt) being an effective treatment, research suggests that many young people with this disorder do not have access to good-quality cbt. internet-delivered cbt could be an effective method to increase availability of evidence-based treatments for youth with social anxiety disorder. the primary objective of this study is to test the efficacy of internet-delivered cbt (icbt) for youth (10 - 17 years) with social anxiety disorder. the investigators aim to conduct a randomized controlled trial with n = 101 participants. participants will be randomized to either the active treatment arm (guided icbt) or to a control condition (guided internet-delivered support and counseling). follow-ups will be conducted at 3 and 12 months after post-assessment.


Eligibility criteria:
inclusion criteria: * a principal diagnosis of social anxiety disorder, as defined by dsm-5 * age between 10 and 17 years * ability to read and write swedish * daily access to the internet through a computer or similar device * a parent or caregiver that is able to co-participate in the treatment * participants on psychotropic medication must have been on a stable dose for the last 6 weeks prior to baseline assessment exclusion criteria: * diagnosed with autism spectrum disorder, psychosis, bipolar disorder or severe eating disorder * present risk of suicide * ongoing alcohol or substance abuse * occurrence of domestic violence * completed cbt for any anxiety disorder within the last 6 months (defined as at least 5 sessions of cbt including in vivo exposure sessions)

Keywords: social anxiety disorder cognitive behavior therapy internet-delivered treatments children and adolescents randomized controlled trial
long-term effects of a lay health advisor intervention on immigrant children's caries

Conditions: Caries,Dental

Summary: the aim of this study was to evaluate the long-term effectiveness of a lay health advisor (lha) intervention on immigrant children's caries and preventive behaviors.this randomized controlled trial included mother-child pairs in the intervention group (ig) and a brochure-only control group (cg), respectively. the ig received a four-week one-on-one session by an lha on caries-related knowledge and brushing techniques. baseline and follow-up surveys were used to collect the data in caries experience and maternal caries preventive behavior.

a randomized experimental design was used. vietnamese women whose children aged 2-6 years were recruited through churches, chinese schools, immigrant service centers, kindergarten, or recommendations from lhas in kaohsiung city in taiwan. overall, 30 and 25 vietnamese mother-child pairs were randomized into the ig and cg. g\*power (version 3.1.9.4) was used for power analysis. a power analysis was established by effect size as the mean difference of filled teeth change between baseline and 8-month follow-up measurement between the ig and cg, with sample size and 0.05 alpha level. the power was greater than 0.802, and research results have adequate power.all children underwent oral examination at baseline and at 1-week, 2- and 8-month follow-ups. each child was examined by a dentist in accordance with the primary dentition caries experience.each immigrant mother completed surveys at baseline and at 1-week and 8-month follow-ups.

Eligibility criteria:
inclusion criteria: * vietnamese women whose children aged 2-6 years exclusion criteria: * none

Keywords: caries immigrant lay health advisor preventive behavior oral hygiene
evaluation of tuberculosis treatment outcomes

Conditions: Tuberculosis

Summary: tuberculosis (tb) is an infectious disease caused by mycobacterium species grouped in the mycobacterium tuberculosis complex. tb remains a major global health problem, despite the fact that there are drugs that can eradicate the infection. the study aims to describe the clinical, microbiological, therapeutic and prognostic characteristics of tb patients afferent to the sc infectious diseases of a.o. ss antonio e biagio e cesare arrigo of alexandria during 2019-2022 and, secondarily, to evaluate the treatment outcomes (as defined by the world health organization) of tb patients afferent to the sc infectious diseases of a. o. ss antonio e biagio e cesare arrigo of alexandria considering the influence of the sars-cov-2 pandemic (pre-pandemic, inter-pandemic and post-pandemic period) and to evaluate the post-treatment relapse rate.

tuberculosis (tb) is an infectious disease caused by mycobacterium species grouped in the mycobacterium tuberculosis complex. tb remains a major global health problem, despite the fact that there are drugs that can eradicate the infection. of concern, however, are both underdiagnosis and the circulation of strains resistant to first-line therapies. indeed, if not properly administered, tb treatment regimens are associated with unfavorable outcomes, promoting the circulation of the bacterium and the emergence of drug resistance. monitoring the effectiveness of tuberculosis treatment is therefore of paramount importance in both clinical practice and surveillance to maximize the quality of individual patient care and the effectiveness of public health actions. the covid-19 pandemic has created unprecedented challenges for populations, public health departments, and health facilities worldwide, and is likely to have devastating effects on global tb prevention and control programs, including a reversal of the progress achieved over the past decade.the present study aims to describe the case history of tb patients afferent to a.o. ss antonio e biagio and cesare arrigo in alexandria and to evaluate treatment outcomes. this facility underwent a disruption of services during the pandemic period, and also initiated in the post-pandemic period a tb clinical management service with an active retention-in-care approach, generating appointments for follow-up visits and contacting patients who did not keep these appointments.

Eligibility criteria:
inclusion criteria: * patients aged ≥18 years * patients with tuberculosis with microbiological confirmation * patients notified to the ss surveillance and control hospital infections antimicrobial stewardship of the alexandria hospital company from 2019 to 2023 * patients taken in charge by the sc infectious diseases of the alexandria hospital company for whom mod b has been completed * obtaining informed consent

Keywords: tuberculosis covid-19
indirect assessment and intervention for perinatal drug use

Conditions: Drug Abuse

Summary: the purpose of this study is to assess the validity of an indirect computer-delivered screener for drug use and assess the efficacy of a computer-delivered brief intervention with urban post-partum women at-risk for substance abuse and hiv during the post-partum period.

two factors limit the potential of brief interventions for the reduction of substance abuse and hiv risk. first, the ability to conduct such interventions is dependent upon willingness to disclose drug use and risky sexual behaviors. this is a significant obstacle given evidence that as few as half of drug-positive individuals-particularly women in the perinatal period-report that use. second, there are logistic and financial obstacles to implementing even brief intervention programs, particularly with regard to time, training and provider willingness. in response to these limitations, and with nida support (da018975), the parent health lab at the wayne state university school of medicine developed and validated a sensitive indirect screener that evaluates correlates of illicit drug use rather than drug use itself. the lab also developed a brief computer-delivered intervention designed to build change motivation without presuming the presence of risks to accompany the screener. this intervention demonstrated excellent feasibility and acceptability in phase i testing. following nida's stage model of behavioral therapy development, the proposed study will take the next step of validating the computer-delivered indirect screening and intervention process in a phase ii/stage iib trial with women determined to be at risk by the indirect drug use screener. in addition, given that 47.8% of the prior sample's participants had an sti at some point in their lives, the proposed study will also further expand the existing focus on hiv risk. specifically, we plan to: (a) continue development and validation of the widus screener via concomitant collection of widus protocols and hair/urine samples, as well as by building its ability to indirectly predict hiv risk; (b) revise and upgrade the draft indirect intervention based on expert and participant informant feedback; (c) recruit 500 at-risk women from an urban obstetric hospital; and (d) randomly assign participants into intervention and control conditions, with blinded follow-up assessments at 3- and 6-months. if proven efficacious, this logistically feasible, replicable, and low-cost approach could allow a dramatic increase in the reach--and therefore the population impact--of brief interventions for drug use among at-risk post-partum women. further, any impact on maternal drug use would be further multiplied by indirect effects on the at-risk child.

Eligibility criteria:
inclusion criteria: * 18 years of age or older * able to communicate in english * recently gave birth to healthy infant exclusion criteria: * received narcotic pain medication in past 3 hours * no sleep since giving birth * infant deceased or in intensive care * psychosis or other clear cognitive impairment

Keywords: pregnancy screening motivation